[Nfbf-l] Fw: [fcb-l] The Paper

[RJ Sandefur]

What do you guys think of this paper? RJ
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From: "Edwards, Paul" <pedwards at mdc.edu>
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Sent: Wednesday, December 15, 2010 10:45 AM
Subject: [fcb-l] The Paper


>I am pasting the text of the paper that is now circulating.  It was 
>developed a few years ago by leaders in Florida but we think it says all 
>that needs to be said.
>
> WHY SEPARATE AGENCIES FOR THE BLIND?
>
>
> INTRODUCTION
> For nearly three quarters of a century, Florida has utilized a unique and 
> effective service delivery system to assure its blind and visually 
> impaired residents receive the highest quality training and associated 
> programming necessary for productive independent living.  Its success is 
> due in large measure to the fact that a separate Division of Blind 
> Services has been placed within a Department which has allowed it to work 
> somewhat autonomously, providing the administrative support necessary to 
> function properly.  Another key feature of this effective model is the 
> network of private, not-for-profit community-based organizations providing 
> high-quality rehabilitation services through professionals with national 
> certifications in vision specific specialties.  Furthermore, Florida has a 
> long history of organized blind consumers working with both the Division 
> of Blind Services and its contracted community rehabilitation providers to 
> constantly upgrade and improve services. Over the
>  years, a set of principles for service delivery has emerged in Florida to 
> which all those involved accept. Organizations of and for the blind 
> throughout Florida, the United States, and the world have come to believe 
> explicitly that services must be delivered to people who are blind through 
> separate agencies dedicated to delivering quality outcomes for people who 
> are blind and visually impaired.
>
> The paper that follows is based in part on a document originally written 
> under the auspices of the National Council of State Agencies for the 
> Blind. A coalition of concerned organizations in Florida has revised the 
> document so that it now represents the views of those organizations and 
> agencies who have signed the cover letter accepting this paper.
>
> It is important to us to begin by making a few comments about blind 
> people. It must be understood that most people described as blind have 
> some functional vision. This means that, in addition to being taught how 
> to deal with the vision they do not have, they must also be shown how best 
> to use their residual vision. Moreover, medicine has had a tremendous 
> impact on blindness. Many of the more traditional causes of blindness in 
> children are now better understood. This has meant that many causes of 
> vision loss can be treated which assures that many children will retain 
> more vision. However, medical science is also enabling extremely premature 
> and babies born with congenital disorders to survive which has resulted in 
> the emergence of a population of young blind children who, in addition to 
> blindness, have other secondary conditions that require special treatment 
> and training. This means that an agency serving blind children must not 
> only understand how to deal with vision loss in
>  children but must also understand how to deal with the physical and 
> intellectual issues that often accompany vision loss in our new young 
> blind people. In addition to this population, medicine has also enabled 
> many youngsters with other severe medical conditions which include 
> blindness to survive.
> Medical science is also enabling people to live longer. Most Floridians 
> can now expect to live into their eighties and as they grow older, more 
> and more people in Florida will become blind before they become unhealthy. 
> Nevertheless, vision loss is oftentimes accompanied by other issues such 
> as heart conditions, cancer, stroke or arthritis which must also be 
> considered when delivering services to our older blind population. More 
> than fifty percent of Florida's blind population is over 55 years old and, 
> due to the existence of a comprehensive and mature service delivery 
> system, the Division of Blind Services and its partner community agencies 
> throughout the state are providing the specialized training necessary to 
> assuring people who lose their vision as they get older can continue to 
> live and work in their communities and not have to be placed into nursing 
> homes.
>
> Florida's current population includes 3.1 million persons who are 65 or 
> older, and by 2030, that number will have doubled. Duke University 
> recently published the results of a nine-year study which followed 10,000 
> seniors aged 65+.  By the end of the study, nearly half of that group was 
> diagnosed with one of three major eye conditions: glaucoma, diabetic 
> retinopathy or macular degeneration. Vision loss among Florida's older 
> population is likely to have an immense economic impact.  Greg Goodrich, a 
> national expert in the issues of people with visual impairments, offered 
> the following statistics as part of a lecture delivered in 2006: research 
> shows more than $20 Billion in direct health care costs and $80 Billion in 
> indirect costs associated with vision loss-the latter can be reduced by 
> cures as well as by rehabilitation.  "Vision disorders including cataract 
> are the largest health cost in dollar amount:  more than depression or 
> stroke and greater than diabetes and asthma combi
> ned."
>
> There are twice as many blind and visually impaired people in the United 
> States as there are people with Alzheimer's disease.... approximately 10 
> million vs. about 5.5 million.  (source:  American Foundation for the 
> Blind and Alzheimer's Association.)  What these statistics make clear is 
> the importance of the decisions that will be made in the next few years 
> about service delivery to Floridians with blindness and low vision.  These 
> will have significant impact not only to those individuals affected but to 
> the economic and social well-being of the State of Florida.
>
> Between the two populations of the very young and old, there are blind 
> children, teens and adults who must be taught an entire range of skills 
> necessary to productive and integrated community living. Diabetic 
> retinopathy and glaucoma are among the growing causes of significant 
> vision loss in adults under the age of 65 as well. The Division of Blind 
> Services helps students, job-seekers, home makers, children and older 
> people to realize their potential by providing or arranging for the 
> specialized training they need. The Division and its network of 
> community-based agencies advocate and work with local school districts and 
> the Florida School for the Blind to assure children receive the specific 
> and comprehensive services they need to go onto higher education and 
> meaningful employment. They also advocate with colleges and universities 
> to make certain that they are ready to meet the needs of blind students 
> leaving school. They work with other government agencies and with the 
> busin
> esses of Florida to create openness to people who are blind throughout our 
> state. At its heart, our service delivery model, because it is focused on 
> the needs of blind people, can provide the comprehensive advocacy that is 
> necessary for blind people to be fully able to achieve inclusion in our 
> society. In addition, the Division also supervises the library that 
> provides Braille, talking book and digital materials to people who are 
> blind throughout Florida both through the main library in Daytona Beach 
> and through subregional libraries throughout the state.  At the heart of 
> Florida's service delivery system is the recognition that we must create 
> and maintain a flexible, specific range of services delivered through 
> regional offices, community-based agencies, and subregional libraries. 
> These must be overseen by leaders who actively seek and utilize input from 
> consumers and their organizations who live and work in the communities 
> being served. As you read this paper, be aware th
> at all of the organizations and agencies who have signed on to this 
> document are committed to the absolute belief that blind people, with 
> training and support delivered through a discreet agency, can and will be 
> able to fully demonstrate their abilities to become and remain residents 
> of Florida who are deeply committed to full participation in our state's 
> activities.
>
> THE PROBLEM
> Because of the myths and stereotypes of blindness, rehabilitation agencies 
> for blind persons must take a different approach than those agencies that 
> serve persons with other disabilities.  Agencies serving the blind must 
> deal with two problems.  Of course, they must address the physical loss of 
> vision by teaching specialized skills and techniques.  But, they must also 
> address the misconceptions that surround vision loss.  The second aspect 
> involves creating attitudinal changes in clientele and in society.  This 
> requires that rehabilitation professionals working with blind persons 
> possess in-
> depth knowledge about the abilities of blind people.  In addition, they 
> must possess the ability to teach blind persons how to deal positively 
> with public attitudes, and must be prepared to deal with those attitudes 
> themselves.
>
> BACKGROUND
> Throughout history, people have feared blindness more than any other 
> physical disability.  In the last few years, AIDS, cancer and Alzheimer's 
> Disease have become more feared in industrialized nations because massive 
> publicity has brought them to the forefront.  For most of the world, 
> however, blindness is still the most feared.
>
> The fear of blindness is based largely upon two elements: the extent to 
> which we rely upon vision as our primary sense, and the negative images 
> about blindness which are almost universal throughout the world.  These 
> negative images are pervasive and
> deeply entrenched: If you can't see, you can't do; blind people are 
> dependent and not able to meet their own needs; they cannot work, travel, 
> enjoy recreation or maintain households.  These two elements represent 
> myths and stereotypes which constitute a
> dangerous and misleading view of blindness.  They lead the general public 
> to assume that visually impaired persons lead cloistered, sterile lives. 
> They deny the essential truth of the normality of blind persons.  They 
> deny the fact that many, many blind people lead successful, fulfilling 
> lives.  All those concerned with the welfare of blind persons, plus blind 
> persons themselves, must understand that the myths and stereotypes held by 
> the general public are the single most difficult obstacle
> to assisting blind persons to achieve success in life.  Whatever other 
> elements are involved, rehabilitation staff and their clients are always 
> confronted with the need to overcome these perceptions.
>
> WHAT'S AT STAKE?
> For years many states have examined the feasibility -- even the 
> desirability -- of merging specialized agencies for the blind with other 
> human service agencies.  Even with the attractive idea of saving money by 
> creating a massive bureaucracy, many states reached a different 
> conclusion.  They determined that true cost effectiveness, efficient and 
> timely service delivery, focused management, and competent targeted 
> leadership are best accomplished in a separate agency, or in an 
> identifiable department or bureau with competent, qualified and trained 
> staff.
>
>
> Research to compare outcomes of rehabilitation services for people who are 
> blind according to specialized or general settings has been limited.  The 
> best designed study (conducted for the U.S. Rehabilitation Services 
> Administration by a neutral research firm - - JWK International) had two 
> major findings.  First, most state agencies, even those not identified as 
> providing rehabilitation services solely for persons who are blind or 
> visually impaired, chose to serve blind people either:  via a specialized 
> unit within the agency, or via counselors in a specialized unit within the 
> agency, or via counselors with specialized caseloads.
>
> Second, specialized caseloads, regardless of agency type, produced better 
> rehabilitation outcomes for blind clients.  This and other studies have 
> supported the advantages of separate agencies.
>
> WHY SPECIALIZED SERVICES?
> Nowhere is the need for specialized, intensive services more apparent than 
> in dealing with the consequences of blindness.  The basic skills and 
> techniques to overcome blindness are many and varied and teaching these 
> basic skills requires discrete knowledge, a thorough understanding of 
> blindness and the problems attendant to
> it.  Unique skills related to this disability:
> 1.  Traveling with the long cane or the guide dog.  Such training must 
> encompass how to assess the environment and move about efficiently in it.
> 2.  Braille, a system of reading and writing which depends upon the 
> tactile identification of raised dots.  Braille will vary in complexity 
> from a simple alphabet to specialized notations for computers, foreign 
> languages, music, math and other disciplines.
> 3.  Assistive technology, including the use of synthetic speech for 
> computers, closed circuit television magnifiers, Braille computer 
> terminals and reading machines or scanners.  This includes assessment of 
> the need for specific devices to accomplish specific tasks. It is now 
> crucial that people with vision loss of all ages are provided the training 
> that will allow them to access the internet which will involve learning to 
> use several access technology approaches.
> 4.  Independent living, including all the skills for personal and home 
> maintenance --  from grooming, to how to cook, to how to get to work.  In 
> short, blind people must learn alternative ways to do all those things 
> sighted persons take for granted in daily living.
> 5.  Personal adjustment, which is a blind person learning how to deal with 
> the effects of total or partial loss of vision and how to respond to 
> negative thinking about the abilities of blind people. It is becoming 
> universally accepted that a core component of training for all blind 
> people must be an acceptance of blindness as a positive and inescapable 
> part of who a blind person is. Only armed with this "pride" can a blind 
> person truly cope with vision loss.
>
> The efficient, effective transmittal of all the skills required to cope 
> with blindness requires the specialized attention of experts whose own 
> unique training and experience has been focused on those who are visually 
> impaired.
>
> WHAT STRUCTURE IS MOST CONDUCIVE TO EFFECTIVE DELIVERY OF APROPRIATE 
> SERVICES?
> Several considerations must go into determining which administrative 
> structure is most appropriate to deliver effective services:
>
> 1.   Savings or Service -- Does the consolidation of administrative 
> functions usually or necessarily result in meaningful savings? Are larger 
> units of government efficient, considering the inherent problems of 
> complex bureaucracies in terms of slowness and lack of focus?
>
> 2.   Consolidation or Specialization -- Are there things to be learned 
> from big business which, because of hard lessons learned from unhappy past 
> consolidations, is now moving to decentralize and adopt the practice of 
> smaller, more specialized units.
>
> 3.   Ease or Difficulty of Access -- How can blind and visually impaired 
> persons best access services? Accessing service delivery systems always 
> presents problems for consumers, especially for persons who are blind or 
> visually impaired because they are a minority among the total disability 
> population.  Aren't their specialized needs likely to be lost in a 
> combined setting which attempts to deal with the needs of persons with all
> types of disabilities?
>
> 4.   Generic Skills or Relevant Knowledge -- Can persons trained to 
> provide general rehabilitation services furnish the kinds of services 
> visually impaired persons require?
>
> 5.   Generalized or Specialized Focus -- Can senior managers of 
> generalized rehabilitation agencies bring to bear adequate specialized 
> training and experience to develop the most effective service programs for 
> blind and visually impaired persons?
>
> WHAT DO CUSTOMERS WANT?
> A paramount issue in deciding upon the structure of a service delivery 
> system for blind and visually impaired persons must be the view point of 
> the consumers of the services.  All major organizations of and for the 
> blind agree on the need for specialized services.  They overwhelmingly 
> believe that the most appropriate way to deliver such services is through 
> a separate agency.
>
> Reasons for agreement include the following:
>
> *       Access to decision-makers --  not buried in a bureaucracy.
> *       Specially-trained personnel who can use their skills and abilities 
> to facilitate the acquisition of vocational and independent living skills.
> *       Appropriate representation on advisory councils, task forces, and 
> other work groups so that their specific needs can be addressed.
> *       An agency that advocates for blind persons to overcome the myths 
> and stereotypes so evident in our society.
>
> CONCLUSION
> The skills of blindness are markedly different from the skills required by 
> other disabled persons.  The methodology of instructing the blind and 
> confronting the issues of blindness in our society require the development 
> of specialized service programs, with
> service delivery by specialized personnel.  Therefore, the signatories of 
> this document support the concept of a separate service delivery system 
> and organizational
> structure for the blind to maximize the success of blind persons served by 
> rehabilitation agencies.  We advocate that the most appropriate means to 
> provide services is through the maintenance of a separate and distinct 
> service delivery system through the Division of Blind Services in the 
> Department of Education, allowing for the provision of comprehensive 
> programs designed to meet the specific needs of people who are
> blind and visually impaired.  This Division must continue to provide 
> services to the life-continuum of specific needs of children, working-age 
> adults, and older persons who need to adjust to blindness. Services must 
> be provided and coordinated for veterans who lose their vision as well. 
> According to recent VA and Department of Defense reports, because of the 
> current war this segment of the population is growing rapidly.  It 
> includes many service personnel who have suffered not only physical eye 
> injuries resulting in blindness, but also those who are surviving 
> catastrophic incidents that result in traumatic brain injuries (TBI).  An 
> injury, in many cases, associated with vision loss as well.
>
> We categorically believe that any agency serving the blind must seek, 
> receive and value input from all appropriate stakeholders. Specific means 
> of receiving such input and providing feedback for such input must be an 
> inherent part of the structure. We who have signed on to this document 
> absolutely believe that, with appropriate and separately delivered 
> services, Florida can maintain its place at the forefront of states 
> delivering services to people who are blind. Without providing such 
> services, blind people will find themselves more and more dependent on 
> welfare. Florida must choose to create a competent and well-trained blind 
> population rather than accept the idea that blind people are incapable of 
> assuming a meaningful place in our state.
>
> We know that our service delivery system has accomplished much. We still 
> have much to accomplish but remain convinced that we will continue to be 
> successful only by maintaining the exemplary coalition of stakeholders 
> that makes our state's service delivery system for people who are blind 
> among the best in the country.
>
>
> Obviously, your comments are welcome.
>
> Paul
>
>
> Paul Edwards, Director
> North Campus Access Services
> Room 6113
> 11380 Northwest 27 Avenue
> Miami, FL 33167
> Work Phone: (305) 237-1146
> Work Fax (305) 237-1831
> Home Phone: (305) 692-9206
> Cell Phone: (305) 984-0909
> Work Email: paul.edwards at mdc.edu
> Home Email: edwpaul at bellsouth.net
>
> ABILITY COUNTS
>
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